Worrying about cancer
coming back

After treatment has finished, it’s normal to feel worried and uncertain. For some people, it can take years before they are confident the cancer is cured. Feeling worried or uncertain doesn’t mean you’re not coping with life after cancer. But if you feel like you’re not coping, talk to your GP and ask for help.

There are ways to cope with feelings of worry and uncertainty so that you can continue with your life. Even if these feelings don’t completely go away, you can learn to manage them.

Start by focusing on what you can do now rather than what is out of your control. You might want to try talking about your feelings, getting support or focusing on your well-being. You may find that some situations can trigger worry. If this happens, it’s a good idea to talk to someone about your concerns. This can help you avoid getting into a habit of always worrying and make you feel you have some control.

Reviewed: 31 Oct 2013 Next review: 2016

Worry and uncertainty

You will probably feel relieved when you have finally completed treatment to get rid of the cancer. But you may find yourself worrying about whether it has worked and what might happen in the future. It’s natural to feel like this.

For many people, treatment will cure the cancer and it will never come back. Some people may want to know if they need to wait a number of years to be confident the cancer is cured. Or they may ask if there is a time when the cancer is more likely to come back and what can be done if it does.

Even when your doctor is reassuring, it’s normal to still worry. Most people who have been through cancer treatment live with some worry and uncertainty. This doesn’t mean they are not coping with life after treatment.

However, some people find it harder to cope with feelings of uncertainty. They may feel as if they have very little control over their lives. How uncertain or worried you are can depend on things such as your age, whether you have ongoing treatment side effects, and how you deal with life in general.

Coping with these feelings

There are ways to help you manage worry and uncertainty. Realising that you will always have some of these feelings can be a good place to start. This may be hard and can take time, but there are people who can help you with this.

Focusing on what you can control right now is one way of managing your worries. It can help you to stop dwelling on future ‘what ifs’. Rather than worrying about things that may never happen, concentrate on what you can influence and do now. This can include:

talking about your feelings

getting support

becoming more involved in your own care

following advice from your cancer team

focusing on your well-being

knowing when you need help withoverwhelming feelings and where to get it.

When we talk about your cancer team we mean the main people that have been involved in your cancer care. This usually includes your cancer doctor (oncologist), surgeon, specialist nurse, or other health professionals such as your physiotherapist, pharmacist, or dietitian.

Some of the suggestions we make may not fit in with your way of coping. There are no right and wrong ways to cope. You can adapt the suggestions in the ways that you find most helpful.

Hodgkin lymphoma coming back

Situations that may trigger worry

You’ll probably find there are certain situations that trigger your feelings of worry and uncertainty. These can differ from person to person. Sometimes worry might feel more like a vague sense of dread. Recognising situations when you feel like this can help.

For example, you may worry that the doctor will give you some bad news when you’re due for a follow-up visit or test. Or it may bring back memories of being diagnosed or of having treatment.

Another example could be hearing of a person you know whose cancer has come back or who has died. This could be someone you went through treatment with or perhaps a celebrity with the same type of cancer as you.

Any of these situations may trigger worries about your cancer coming back. But no two cancers are alike, even if they are the same type. So comparing yourself with others is not usually helpful.

Another situation that can trigger worry is having a new pain or symptom. You will still get everyday aches and pains after cancer treatment. A new symptom could be nothing to do with the cancer. Or it could be a late side effect of treatment or a side effect of a drug you’re taking.

It’s important to get any new pain or symptom checked by a member of your cancer team if it continues. If you do nothing, you are likely to carry on feeling anxious.

Worrying that the cancer may come back is a natural reaction. However, some people get caught up in a cycle of worry. For example, a person with an ache or pain that’s already been checked may still worry the cancer has come back. They may keep checking themselves for new symptoms. This can make them feel very anxious in the long run.

Talking and getting support

Some people feel that they need to look as if they are coping well. They feel they must put on a brave face or protect other people’s feelings. But people close to you usually want to know how you really feel so that they can support you. Sometimes they may find it hard to talk to you about their own feelings if you do not talk to them about yours. It can be lonely for everyone involved if you are all protecting each other.

Talk to someone you trust and feel comfortable with. If you find it hard to talk to people close to you, tell your cancer team or GP. They can refer you to a psychologist or counsellor.

Talking about your worries or uncertainties helps you to:

get them out in the open and stop you from going over things repeatedly

understand your feelings and put them into perspective

work out if you need to act on them, for example by contacting your cancer team to stop worries from growing bigger in your mind

feel closer to the people you talk to.

Join a support group or online community

You may find it useful to talk to someone in a similar situation. Sometimes just realising that other people have similar thoughts and feelings can help you feel more able to cope.

You can get involved in a support group and attend their meetings. Some organisations or support groups offer buddy systems. Some offer counselling or complementary therapies.

You can also ask questions and get support from others through the internet. You can visit Macmillan's online community to talk about your experiences with other people.

Remember that other people’s experiences may not be relevant to your situation. If you find sharing your own experience or reading other people’s makes you more anxious, it’s probably better to get support in another way.

Write it down

Writing about what is happening to you can help you express your deepest feelings privately. You might find that it helps give you a sense of control. Sometimes keeping a diary or journal can help you work through various problems.

Reading it back can help you become more aware of your thoughts and feelings. It can also help you identify what the real issues are for you, what triggers them and what has helped you to cope.

Try to include the good or positive things that have been helpful as well as the things you find difficult.

Knowing if you need more help

The worry of cancer coming back can sometimes be overwhelming. Some people find they repeatedly have the same worries and thoughts that their cancer will come back. This can make them feel constantly anxious or even depressed.

Feeling anxious all the time can be very hard. You may start to avoid social situations and this can lead to you feeling isolated. You may also have feelings of sadness and a low mood. If these feelings do not improve or get worse, it may mean that you are depressed.

Sometimes, it’s difficult to know if you’re depressed. It can also be hard to admit that you’re depressed and to talk about it. Other people may notice and suggest that you might need help.

If you or someone close to you thinks you may need help with anxiety or depression, speak to your GP, specialist doctor or nurse at the hospital. They will listen and offer advice or refer you to a counsellor or psychologist. Your doctor may prescribe medication to help. This may only be needed for a short time.

Looking ahead

Having a sense of purpose in your life can help you shift your focus away from worrying and onto a positive outlook about life. Everyone does this differently. Some people like getting involved in a new activity. Others focus more on their everyday life such as family and friends.

The worry that your cancer may come back is something that may never go away completely. But while it may be tough at times, it is possible to live life to the full with the right help and support.

Thanks

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